not sure if dislocation or sublaxtion or none of above?

[algbas]

Hi Everyone
My prolblem happens when i am "sound asleep"laying on my left side with my right leg bent up at the knee. I will at least five times or more a month wake up with "horrible pain" and my leg is locked at my knee.this has been going on for more than three years now and i have fibromyalgia so knowing that i just figured aahh just another fibro thing.....here is some back ground with regards to how long i have been dealing with knee pain. first sign of knee pain was when i was bout 12yrs old and again only at night and my knees would ache like a toothache for a few years and the ortho i saw said i had loose kneecaps and i had to wear a brace and home excersises which did finally help. that or i grew out of it (i still am not really sure). I'm 41 now and have wieght bearing knee pain for more than 15yrs.It gets so bad i have had to leave activities stores etc in tears and have become very depressed over my now limited life....all again thinking it's my firo. I am also very flexible and believe I am hypermoble in most of my major joints...ankles, wrist, fingers,hips,toes, Knees bow backwards all my life and i always thought it was normal but sounds like it is anything but normal...boy do i have questions but I don't want to bore u all.
tring to make this short so flash forward to this past march with new rhuematologist who suggested an mri of my lower back then
"I asked to have my knees MRIed too so I got the mri results from the doctor who told me i have water in both knees and a torn meniscus in right knee UGH. Anyway I am having surgery july 13th and the ortho is going to go in and repair or remove meniscus and what"really what truely scares me is that he said he will also do a lateral release and from what i am reading on post here that LR when u r hypermoble may be a no-no?
Any words of wisdom would be wonderful at this point as i am still not sure bout my knee locking and only at night and the ortho said he did not see a torn menscus on my mri so Please Help I am confused....Thanks so much

[welshbabe]

hi algbas

sorry to hear about the trouble your having & welcome 2 the forum!! i had to comment as soon as i read the part about u being hypermobile and about you having a lateral release. im as hypermobile as you cant get and suffer with both kneecap dislocations. i had the lateral release surgery done b4 they diagnosed me with begning joint hypermobility syndrome and the LR made my condition worse. i was told that if they knew i had hypermobility then they wouldnt have done the LR. i would discuss this with ur surgeon before you go ahead with this surgery.. i wouldnt want u 2 end up with things being worse like myself!!

as for your query with subluxing / dislocations.. i cant comment on this as i dont know. have you discussed this with ur surgeon.. if so what does he think it is? if not then i think it would be worth asking his opinion..

anymore queries please ask

[Silkncardcrafts]

Hi there,

I totally feel for you, as I have the same problem sleeping.

My kneecap often comes out when I sleep at night and when turning over trying to get comfortable.

A lateral release isn't necessary a no-no if you are hypermobile. It very much depends on the patient. My lateral structures were very tight. So, made sense to do a lateral release. My right knee worked pretty well, but needed further surgery on my left knee to address the lateral instability.

It may be worth getting another opinion.

[algbas]

I know the recovery time is different for people but if I may ask how was your recovery from LR? I am terrified cause I have not been officially diagnosed with HMS but, I don't doubt I have it....I can put my hand flat on table and twist my arm around, I can put the soles of my feet together straight legged like I am praying, put both my arms behind my back and clasp together, my wrists have always locked then u hear them snap unlocked, the first joint closes to the nail bends to opposite direction and fingers bend way back and to the sides (with large knucles??)i use to be able to pull my foot back to my when young haven't tried this in long time but probaly can still do it....I have been diagnosed w/ fibro and always felt like it was wrong due to the fact that my pain is mostly in my joints. oh yeh I can most definitly touch the floor w/ palms again w/ straight legs ect...My biggest concern however is my bladder uterus and colon.....i was diagnosed with ischemic colitis (and told only ederly people develope this)????
My bladder alot of the time when I wake is so painfully full that i can't urinate due to pain and when i do finally go i wonder how i can hold somuch and when i had my first son they had to cath me, nurse could not believe I could hold so much urine in mu bladder.
Then there is my uterus and rectum i will get this horrible pain that is as if they are going to fall out and worse yet I never know when it will happen...a sneeze cough lifting getting up from sitting and even will happen when I am sound asleep and it will always leave me unable to move as it makes it worst and only way to relieve it is to take muscele relaxer soma which works fast and i keep it all over my house and purse...I also have some issue with ischemic heart valve???Not sure I should dig out my test results.
Can anyone recommend a doc in my area who can test me in pennsylvania....Thanks so much

[welshbabe]

i remember when i had my LR surgery .. recovery wasnt too bad. not much pain at all when i woke up (a little pain but controlled with painkillers) it was bandaged up and i was given crutches. i was more or less weight bearing straight away with crutches. some physiotherapy after it to keep those muscles strong and that was it

[Silkncardcrafts]

Hi Anna Lee,

The recovery from the LR wasn't too bad. Initially I wore a tubigrip and used crutches for a week or two. Then, I had lots of physiotherapy to strengthen the muscles around my knee.

Sorry I can't recommend a doctor in Pennsylvania.

I wonder about the diagnosis you were given of fibro too. You can get a lot of pain with hypermobility syndrome. With Marfan's Syndrome you can also have heart problems, which is a type of hypermobility. Fortunately I don't have Marfan's Syndrome. So, that may be something else to consider.

Would recommend going to see a good sports physician. In the U.S. I think they are often called physiatrists. So, may be worth looking for someone good.

[KW]

What part of PA are you in? If you are looking for someone in the Philly area I have 2 fantastic OS's. One is in Center City and the other is in the Montco.

Best of luck,
Karen

[algbas]

welp surgery went very well and I was doing more than I was supose to but I had minimal pain after the first three days and had my follow up with ortho that third day and when he walked in the first words out of his mouth were "you are extremely hypremoble!" and I thought finally someone who understands so, naturally I began to try to ask questions like "could this be causeing my problems?" And of course I was told yet again by this doctor that there is nothing that can be done it is how I was born???!! UGH I get that but are there any preventative measures I can or should be taking to avoid injury?
Oh yeh Ortho also showed me pics of surgery he did and showed me the gouge "not tear" in my meniscus and said" I Have No Idea How You Did This" and "He had never seen this before"??? it was a whole with a small flap very small and from what I understood he had never seen this before???? Anyone else have this type of meniscal injury? And I should also mention it did not go all the way through and it was in the medial mid body of the meniscus. The doc also removed plica and 4 1/2 wks later I said when do we do the other knee as I can stand longer on new knee longer than old knee
I want to let u all know how I have been doing and Thank You all for your widom it has been a world of help to me
TO KW I use to live in mongomery county Lansdale and grew up in Hatfield and I would love the name of yr Docs Thanks in advance
Ann

[KW]

Ann, I just sent you a PM with the 2 OS's info. Lansdale is only 10 min at most form me.

Best of luck,
Karen